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@Ravn , I did hear one of the autonomic experts mention the value of retesting patients over time. He mentioned that some patients’ symptoms seem to change or evolve and may need to be re-evaluated to adjust treatment. I think it was Dr Brent Goodman, and he was speaking of autonomic patients...

@LJord , that’s great! Hope it goes well at the open house.

Yes, I hope they have an acronym!

Forgot to mention that the technique used is photoplethysmography, which is using light to measure changes in volume. The company has much more info on its website now (it was rather lacking a few months ago, which was unfortunate). There are also examples of data from a person with POTS...

The research letter is now available to read (no paywall): https://www.jacc.org/doi/10.1016/j.jacep.2023.02.002

If you are in Canada, there is an odd entity that’s been created called “postural symptoms without orthostatic tachycardia (PSWT)”, which is then defined as having POTS symptoms without tachycardia, or without tachycardia sufficient to meet the POTS diagnostic criteria for tachycardia. Given...

In the absence of access to full autonomic testing, a backwards way to try to elucidate whether you lie in the cerebral vasoconstriction group or the venous compliance (poor venous return or low blood volume) group would be to try volume expansion. The ultimate form of volume expansion would be...

Another normal HR and BP possibility is described by Dr Novak as HYCH (hypocapnic cerebral hypoperfusion): https://journals.plos.org/plosone/doi?id=10.1371/journal.pone.0204419 He has only diagnosed a few people with this, and there’s no mention of co-morbidities, so I don’t know whether any...

My daughter falls into the “normal BP and HR but experiences OI” during NASA lean test (and in everyday life). Outside the test, she has what seems to be age-related mild hypertension, which arrived 15 years in. It isn’t affected by standing or sitting though. We have been following Dr Peter...

@Hutan , thank you very much for the suggestion. I will give it a try and report back.

I've been trying to organise this test for my daughter for some time, so we've read as much on it as we can. Gets a bit technical sometimes. In the literature, I've noticed that some groups measure at the carotid (and sometimes also vertebral) artery, and some groups measure at the middle...

@Hoopoe , I'm only new today, but happened to see this thread. I think a similar study to what you are thinking of has been done on POTS patients in 2020: "Cerebral Blood Flow and Cognitive Performance in Postural Tachycardia Syndrome: Insights from Sustained Cognitive Stress Test"...